Abstract：
OBJECTIVE: Care for people with spina bifida can be improved. This may be done by evaluating mortality rates and causes of death.
METHODS: Between 1973 and 2021, 1735 people with spina bifida appeared in registers of the Swedish population. Survival rates and causes of death were calculated according to age and decade.
RESULTS: Over almost 50 years, the prevalence of spina bifida decreased from 5.2 to 1.2 per 10 000 births. Mortality fell sharply during the first year of life, with survival rising from 75% to 94%. For children aged 2-18 years and adults, mortality rates were low and differences between decades were minimal. Causes of childhood deaths were congenital abnormalities, hydrocephalus and infections, the latter two also in adults. Adult causes also included self-inflicted injuries and substance abuse, with suicidal or unclear intent, both more common than in the general population. Bladder malignancies were also more frequent, although after reconstructive bladder surgery, mortality rates were similar.
CONCLUSIONS: Survival in the first year of life increased in children with spina bifida, whereas there was no difference in survival rates between adults born between 1973 and 1999. For adults, proactive prevention methods regarding self-inflicted injury, substance abuse and bladder cancer are warranted.
METHODS: Between 1973 and 2021, 1735 people with spina bifida appeared in registers of the Swedish population. Survival rates and causes of death were calculated according to age and decade.
RESULTS: Over almost 50 years, the prevalence of spina bifida decreased from 5.2 to 1.2 per 10 000 births. Mortality fell sharply during the first year of life, with survival rising from 75% to 94%. For children aged 2-18 years and adults, mortality rates were low and differences between decades were minimal. Causes of childhood deaths were congenital abnormalities, hydrocephalus and infections, the latter two also in adults. Adult causes also included self-inflicted injuries and substance abuse, with suicidal or unclear intent, both more common than in the general population. Bladder malignancies were also more frequent, although after reconstructive bladder surgery, mortality rates were similar.
CONCLUSIONS: Survival in the first year of life increased in children with spina bifida, whereas there was no difference in survival rates between adults born between 1973 and 1999. For adults, proactive prevention methods regarding self-inflicted injury, substance abuse and bladder cancer are warranted.
摘要：
目的：脊柱裂患者的护理可以得到改善。这可以通过评估死亡率和死亡原因来完成。
方法：在1973年至2021年之间，1735名患有脊柱裂的人出现在瑞典人口的登记册中。根据年龄和十年计算生存率和死亡原因。
结果：近50年来，脊柱裂的患病率从每10000名新生儿5.2降至1.2。死亡率在生命的第一年急剧下降，生存率从75%上升到94%。对于2-18岁的儿童和成人，死亡率较低,几十年间差异极小.儿童死亡的原因是先天性畸形，脑积水和感染，后两者也是成年人。成人原因还包括自我伤害和药物滥用，有自杀或不明确的意图，两者都比普通人群更常见。膀胱恶性肿瘤也更常见，虽然在膀胱重建手术后,死亡率相似。
结论：脊柱裂患儿出生后第一年的生存率增加，而1973年至1999年出生的成年人的生存率没有差异。对于成年人来说,关于自我伤害的积极预防方法，药物滥用和膀胱癌是必要的。
方法：在1973年至2021年之间，1735名患有脊柱裂的人出现在瑞典人口的登记册中。根据年龄和十年计算生存率和死亡原因。
结果：近50年来，脊柱裂的患病率从每10000名新生儿5.2降至1.2。死亡率在生命的第一年急剧下降，生存率从75%上升到94%。对于2-18岁的儿童和成人，死亡率较低,几十年间差异极小.儿童死亡的原因是先天性畸形，脑积水和感染，后两者也是成年人。成人原因还包括自我伤害和药物滥用，有自杀或不明确的意图，两者都比普通人群更常见。膀胱恶性肿瘤也更常见，虽然在膀胱重建手术后,死亡率相似。
结论：脊柱裂患儿出生后第一年的生存率增加，而1973年至1999年出生的成年人的生存率没有差异。对于成年人来说,关于自我伤害的积极预防方法，药物滥用和膀胱癌是必要的。
